Crohn's Disease Forum » General IBD Discussion » What Does crohnsforum Mean To You?

08-10-2011, 08:00 AM   #1
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Location: Pennsylvania

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What Does crohnsforum Mean To You?

We're patients, parents, spouses, family members, and friends. We're healthy, ill, have questions, have answers, are confident in this, or frightened of that. We have long-time members and brand new ones joining us everyday. We talk diet, injections, symptoms, prescriptions, deficiencies, surgeries, clinical trials, healthcare, treatments, and complications. We talk long-term side effects short-term life effects. We vent "aloud," laugh together, celebrate successes, and share stories, recipes, prayers, and well wishes.

What does crohnsforum mean to you?
08-10-2011, 10:01 AM   #2
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Location: Madison, Wisconsin

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Excellent post! To me, it means friendship, understanding, camaraderie (hope I spelled that right!), and not being judged. Being taken seriously even though I'm undiagnosed. Sharing experiences and laughter and tears with people who know exactly what I'm going through. Unconditional support and acceptance. You guys rock!
08-10-2011, 10:07 AM   #3
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Join Date: Mar 2011
Location: Elgin, United Kingdom
I have to agree with a lot of what Cat-a-Tonic says.

This forum is brilliant and been such a help to me this year getting my head around my diagnosis!! I used to fear my disease but now I embrace it!

I always come on here before hounding my GP or GI as usually a lot of my questions are answered by all you wonderful people! I am very grateful to whoever begun this forum, you deserve a medal!


F x
08-10-2011, 10:12 AM   #4
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Join Date: Jul 2011
Location: Hamilton, Ontario
This is the one place I can talk about my health issues and someone actually understands! My family has been supportive but sometimes they look at me like I'm crazy! This is my secret place!
Abdmonial Pain/Bloating
Difficulty Eating
Weight Loss/Gain
Back Pain
B12 Deficient & Low Iron
Stabbing Pains - LRQ Pain
Groin Pain

08-10-2011, 10:23 AM   #5
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Join Date: May 2011
Location: Ohio

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I'm new here, but I love it. I don't feel so isolated. I'm not the only one here going crazy trying to get some kind of diagnosis. I generally feel like I can say what I need to say or ask what I need to ask. I'm sure that'll become even more comfortable over time. I've learned things here that I haven't found through years of research.

I have a supportive wife and mother-in-law, but my parents are not at all supportive. They don't even know I couldn't go into the office for 10 months straight because if I try to tell them what's going on they get mean blaming it on my diet, my weight, my lifestyle, whatever they can come up with other than my body actually being ill. They're coming to visit in a couple weeks, and I am planning to hide my handicap parking tag and just push on through things. I don't like talking to my friends about what's going on, because they can't relate or they underestimate the severity and make me feel like a complainer.
08-10-2011, 11:02 AM   #6
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Jessica's Avatar
Join Date: Oct 2010
Location: North Port, Florida
Acceptance comes to mind.
Dx w/ Crohn's Disease May '08
Dx w/ Graves' Disease June '11
Dx w/ Lymphocytic Colitis October '12
08-10-2011, 01:19 PM   #7
Jennifer's Avatar
For me its finding others who understand and wanting to be there for others because I understand. Even though I've dealt with this for many years I'm still learning new things from all of you and I want to share that new knowledge with others as well. Knowledge is power so we can all get the best treatment and support as possible.
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 75mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel (endometriosis), Tylenol 3 (Osteoarthritis), Zantac 150mg 2/day (acid reflux), Klonopin 1mg (Panic Disorder), Imitrex 25mg (migraines), Zofran 8mg (nausea)
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 19 years and counting.
08-10-2011, 02:15 PM   #8
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Join Date: Jan 2010
Location: Barrie, Ontario

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You can say poop as many times as you want and no one bats an eye....

But seriously, I found this forum right after my surgery and it was a lifeline for me. The people are so friendly and welcoming and no question is a stupid one. I think this forum is like family for many here. I know I talk to my real friends and family about you guys like I know you all and we hang out all the

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

08-10-2011, 02:20 PM   #9
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Join Date: Apr 2011
Location: Bedford, United Kingdom

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It's talking about poo! And bums!

it's my private place, my secret place no one really understands, where I can be totally honest and where people not only understand, synpathise and support me, but where they share the same problems.

It's the one place I feel normal

Diagnosed 2011
Current meds: 6MP and Pentasa
Previous meds: Infliximab, Humira, Azathioprine
08-10-2011, 03:34 PM   #10
Senior Member
Join Date: Oct 2010
to gain knowledge I went from totally fine to needing surgery within a couple of months and I was scared but after getting lots of advice here I felt so much better, where else can you ask anything under the sun and actually get an intellegent answer? I hope now I can give back some of that advice through experience although I'm still learning everyday. Although IBD is so diverse we're all so similar!!

Diagnosed Crohn's 2010
ileocecal resection 2010
Meds: Nil and in remission

08-10-2011, 04:19 PM   #11
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SarahAnne's Avatar
Join Date: May 2011
Location: Panama City, Florida

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I'm not alone.

And fart jokes.
Dx'd Crohn's April 1996
Bowel Resection w/appendectomy Oct 1996
Gallbladder removed Nov 2005
4 procedures in March/April 2010 to remove a kidney stone
Dx'd Dyshidrotic Eczema April 2011
Dx'd Pancreatitis July 2011
2nd bowel resection 10/12/11 - I have 130cm of small intestines left!
Dx'd Chronic gastritis April 2012

Currently taking:
Cholestyramine powder 1-2x daily
Remicade 5mg/kg every 8 wks
Vitamin D3, B12
08-10-2011, 04:30 PM   #12
Senior Member
Join Date: Apr 2011
Location: Tennessee
Being stuck at home, sick and useless, yet still contributing to something worthwhile
08-10-2011, 05:25 PM   #13
Join Date: Jun 2010
Hope. Being able to read stories of those who are doing well means I may do well some day as well.

Also, as others, a place to vent, gain knowledge, and know I'm not alone in feeling like crap.
08-10-2011, 05:57 PM   #14
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Join Date: Jun 2010
Location: Seattle, Washington

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Support. Answers. There's a wealth of knowledge here that not even health professionals can touch. It's unfortunate GIs don't utilize this resource.
08-10-2011, 06:29 PM   #15
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Join Date: Jul 2011
this forum brings to mind family and support. to be heard not in a embrassing way , not to be judged and to be understood by others that are apart of this forum. it brings hope and real friendship and builds on that friendship. and good sound advice. i hope this forum stays the way it is for very long time for people to come and express themselfs openly.
08-11-2011, 08:11 AM   #16
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Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

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For me, it's giving something back, knowledge and experience.
Back in the day there was no computers or forums, I trawled thro library books!
I found this forum last year when I Googled Prednisolone!
It saved my life and sanity, I honestly thought I was gonna explode! til the peeps on here reassured me that I wasn't!
This is my sanctuary, not Holy, just somewhere to go and hide!


Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!

08-11-2011, 08:19 AM   #17
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Join Date: Aug 2010
Location: THESSALONIKI, Greece

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Lots and lots of people who understand and listen who laugh and make jokes who support and are there any time, not only when it fits their schedule (like my doc)

and poop jokes of course
08-11-2011, 09:16 AM   #18
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Join Date: Aug 2011
Location: staffordshire, United Kingdom
I agree with Cat a Tonic.. It means we're all in the same scenario just varying degrees and experiences. Its good to be able to laugh about it on goods days, cry or vent about it on bad days and all of this with people who can sit in front of their pc's saying "Yep, I know exactly what you mean with that one". Its a complete new learning curve for me personally. I went into work after being disgnosed and a work colleague came up to me all sympathic "How are you hun, have you taken your tablets today?, am sorry to hear your news" In a sad and almost patronising way. To which I answered "Yes I'm all drugged up and oh btw..Its life term, not life threatening hun".lol I maybe should have been more diplomatic but just couldn't resist.
08-11-2011, 03:06 PM   #19
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Grant's Avatar
Join Date: May 2011
Location: United Kingdom

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For me its stopped me descending into the hell that is depression again. Coming on here & reading about others who are obviously so worse off than myself was a wake up call akin to a good face slap. I particularly feel sorry for people in the states etc who have additional worries about insurance etc.
1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection
2012 Laproscopic Laperotomy & Resection
2013 diagnosed with a Fistula
Been on Azathioprine Pred & Methotrexate
Currently on:
Pentasa 4gm daily
Daily Multi Vitamins
3mthly B12 Jabs
08-11-2011, 11:41 PM   #20
Crohn's Mom
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Join Date: Mar 2011
Location: Florida

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it means that I get to keep a little of my sanity
it means that I am not alone.
it means that I have met the most amazing people, and now friends, that I may never meet face to face..but they will hold a place in my heart forever.
it means you CAN trust a "stranger"..but, I still wouldn't recommend eating their candy!

I adore this site, and it is the first forum, chat room, anything of it's type that I have ever been a part of. Thank you to all of you wonderful and loving folks!

Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
08-12-2011, 02:45 PM   #21
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outlier's Avatar
Join Date: Jun 2010
Location: New York, New York

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as people said above. it makes being sick less scary and isolating. Your not the only one out there.
Diagnosed: Crohn's Oct '09
Extraintestinal: scleritis May '08, GERD Aug '09, ankylosing spondylitis Feb '10
Current Meds: Humira, Asacol, Dexilant, domperidone, Tramadol and a whole lot of vitamins
No more sulfasalazine, Methotrexate, Xibrom, Pred Forte and Iron
08-12-2011, 04:14 PM   #22
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Join Date: Oct 2010
Location: Houston, TX, Texas

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I have been dealing with Crohns a very long time. Thought I had it figured out. Well, I WAS WRONG! The people here helped pull me out of such a deep depression, one I thought I could not recover from. I still thank them each day in my thoughts, because I truly know that I would not be here today without that support. You all know who you are. Again, I say thank you.
08-12-2011, 04:31 PM   #23
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Join Date: Jun 2011
Location: Phoenix, Arizona

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I am so thankful to have found this site! Outside of the people I have met here, I do not know anyone with Crohn's. I have received great advice here that I could not find from a book or website. Most of all, I do not feel alone any more!
08-12-2011, 04:33 PM   #24
Senior Member
Join Date: Jul 2011
A place to learn, to find new friends who understand and can help and I hope that with knowledge and in time I will be able to give support to others. It's somewhere i can fit in and feel like I belong and not be frightened of this Crohns that till recently was like a black hole. Having this forum gives me knowledge and strength. This forum is a blessing!

Pentasa 4 times a day
08-13-2011, 11:24 PM   #25
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Join Date: May 2010
Location: New South Wales, Australia
What does the Crohns Forum mean to me...

It means friendship. The type of friendship that is often difficult to find.

It means you are no longer alone.

It means understanding. A place where you know how you feel is instantly understood.

It means acceptance. No explanations are needed, we have our different journeys but we know and accept that difference.

It means courage. It gives you the courage and strength to face the unthinkable.

It means hope. The hope that even in the darkest of days and times there is light and the good times will indeed return.

It means sanctuary. It is a place of comfort, familiarity and softness. A place where you don't see the look of disbelief, boredom, pity or ignorance when you speak of Crohns BUT if I did meet any of you I know that look wouldn't be there.

It means knowledge. The knowledge of experience and living. Sometimes that knowledge scares the hell out of me but I can't forever live with my head in the sand.

It mean honesty. The openness to speak of the the unspeakable and not be shunned or hushed.

It means humour. The ability for the people here to still see the funny side if things, to have a good natured laugh and dig.

It means choice. It adjusts to everyone's level of comfort, disclosure and frequency of use.

It means me. It has become a part of me. It is a place I look forward coming to. It is like meeting an old and trusted friend...sometimes you chat for hours and other times you say nothing but the silence is never awkward.

Mum of 2 kids with Crohn's.
08-13-2011, 11:48 PM   #26
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Join Date: Jan 2011
Location: Alaska

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When I feel like I'm all alone, I can turn my computer on and find comfort and support. I am definitely not as lonely. I am married with a family, but I do try to keep my disease on the back burner with them.
Diagnosed with Crohn's Disease in 2005

Pentasa 2x500mg (4 times a day)
Zofran (as needed for nausea)
Ginger Capsules (for Nausea)
Zoloft 150 mg
Ranitidine 150 mg (2 times a day)
Entocort 3 mg (3 capsules by mouth for 8 weeks, then tapering to 2 capsules for three months)
08-21-2011, 06:02 PM   #27
Senior Member
Join Date: Feb 2011
Location: Manchester, United Kingdom
Crohn's forum to me means always having the comfort that everyone knows exactly how you feel, getting great advice from people who've been there, and the extra knowledge you can take into the doctors office
I'm so glad I joined this forum, especially at a time when I've been in flare for almost 8 months, I don't think I could have done it without you all.

current meds:
Azathioprine 100mg
Steroids (pred) 30mg and tapering

Starting Humira!!

Supplements: Multivitamin and vegetarian omega 3 flaxseed oil

Been on:
Pentasa, elemental diet tube feeds, polymeric diet (no diets worked) steroids many times
08-21-2011, 06:44 PM   #28
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Grumbletum's Avatar
Join Date: Dec 2010
Location: Western Isles, United Kingdom

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I found the forum before my diagnosis and the advice and support I got through that period of fear and uncertainty, through to diagnosis and starting treatment has been invaluable. I would've been so in the dark, in so many ways, without my friends here. When there's news or developments, you are the first people I tell.
Thank you from my bottom...... Of my heart, that is!! :-) xxx
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
10-12-2011, 10:49 AM   #29
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida means inspiration for me. The people here inspire me to be a better, stronger, person. It inspires me to learn so that I might have the answers for someone in need. It inspires me to reach within for an extra helping of compassion as that is what everyone here deserves.
It's good to be back
10-12-2011, 11:11 AM   #30
Join Date: Jul 2011
For me it means complete understanding, compassion,and people who really know what it its like. My family is great but I am the only one with a chronic disease and they don't really understand even though they try to. It means laughing when I am down and just when I think I cannot find it in me to to get up someone is on here saying yes you can....

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